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5. If you got bad news on a prenatal test, how did you respond? How did you go about deciding what to do about these results?




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This article is from the Pregnancy Screening FAQ, by Lynn Gazis-Sax (gazissax@netcom.com) with numerous contributions by others.

5. If you got bad news on a prenatal test, how did you respond? How did you go about deciding what to do about these results?

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Anonymous response 1:

We terminated a pregnancy in May 1994, due to information obtained from an
amino. Our reasons for doing the amino we strickly age related, I was 37
at the time, had 1 miscarriage in 1989 and 1 healthy child in 1991. We
had no family history of genetic disorders and believed that we were just
doing the amino to determine the risks of caring a Downs baby.

The results of our amino came back in record time, one week. The genetic
counselor called to let me know that they had found something, a marker,
but were unable to determine how active it was at the time. Therefore
they wanted to do testing on both my husband and I to determine more about
the marker. We were told at that time that markers are not uncommon and
do not necessarily mean bad news. We were there for the blood tests
within the hour. The counsler promised they would do the tests over the
weekend and let us know as soon as possible. This was a Friday afternoon,
Monday afternoon I couldn't wait any longer and called the counsler, she
knew and it was not good.

The baby I was carrying had Trisomy7P, a seldom seen extra chromosome. I
carry a translocation of the 7th and 15th chromosome, because the pieces
that broke loose and reattached were of the exact same size I have
experienced no abverse effects. So what did this mean for our unborn
child, no one seemed to know exactly. We were referred to the prenatal
genetics clinic. No one we talked to had any experience with this. After
extensive research, it was discovered that there were only 3 report cases.
The expected IQ for this child was some where below 20, with a life
expectance of less than one year that would require extensive surgery to
make that. We could expect severe heart defects, under development of
lungs and liver, respiratory difficulties and more. The odds were this
child would never leave the hospital.

How did we make this decision, with alot help from God. We talked, we
cried, we held our daughter tight and we prayed. My husband and I came
to our decision independantly and for very different reasons, but we came
to the same conclusion, we could not allow our baby to suffer needlessly.
Exactly one week after learning the final results of our amino, I under
went a D&E.

I have never doubted our decision, but even now I must fight back the
tears, I will never forget our daughter.

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From Trish Jalbert (tjalbert@best.com):

When we got the AFP results we went to the followup where they would
have done the amnio if we wanted. Instead, after talking with the
staff, we ended up in a coffee shop having what I think of as one of
life's really big talks.
We decided that people with disabilities are still people and we had
wanted this baby. We figured it was still only a 3% risk. I think
the statistics they give you are misleading. We should have looked
instead at how much the risk had increased. When she was born and we
found out about the DS it was a big shock and we cried a lot. But
more pressing at the time was how sick she was from meconium- we
almost lost her, so the DS seemed trivial, if you can believe it.
Sometimes I'm still jealous of people with regular kids. But I love
her, and I wouldn't give her away for anything, not even a regular
kid.
Guess we'll just have to make one of those next time.

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Anonymous response 2:

Depending on what the news was, I suppose I could have many different
reactions. If I found out my child were going to have some specific
life-long condition I would be very sad but would, in time, try to find out
as much ahead of time as I could about what to do to best help the child.

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Anonymous response 6:

Well, "borderline" high on the AFP wasn't *devastating* news, and my
doctor's approach was to do a very in-depth ultrasound first, and take
a good look at the spine (and everything really), and go from there.
Everything from the ultrasound looked perfect. Then he said it was up
to us if we wanted to have an amnio. We immediately declined. We
thought we had seen enough info from the ultrasound. AFTER we
declined, the doctor said he agreed. He didn't try to sway us either
way. This doctor also said that sometimes high AFP can indicate
future growth problems in the fetus, so they would do two more
ultrasounds at something like 26 and 28 weeks to make sure the baby
was growing properly. These ultrasounds showed fine growth. I think
all of this put our guard up somewhat.

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From Dena Rollo:

Isabel (my three year old (today!!) has a chromosomal translocation -
we were referred for genetic counseling, more tests, etc. It was a
devastating experience - words simply cannot convey how incredibly
awful it was. At the end of all the tests, we were left with a 7%
chance that the baby would be born with severe clinical problems.
Although we had both thought we'd choose to abort, we weren't expecting
such a "gray area" result - we'd thought that either the baby would
be healthy, or definitely not. Faced with fairly "good" odds (that
didn't seem good *at all* when it's your baby!) and the horror (to
me) of a 2nd trimester abortion) and the information (at the height of
our despair, I *needed* to know the baby's gender for some reason, and
Michael said okay) that this was our much-longed-for girl, we decided
to go ahead with the pregnancy. The last four months were grim, but
Isabel was born healthy and beautiful, exactly three years ago today.
Oddly enough, both Michael and I agree that , were we faced with the
same decision today, we'd choose to abort, as we simply love Isabel
too much to have taken that risk for her - but that's hindsight -
and we're so glad we got so lucky!!!!

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Anonymous response 8:

I had the worse possible news during the ultrasound I had
before the amnio. The amnio confirmed the radiologist's suspicion
of a chromosomal abnormality: monosomy 13 -- the lack of one
of the 13th pair of chromosomes. My son had multiple major
abnormalities, the combination of which were fatal. They included
hydrocephaly, spinal bifida, a hole in his heart, fluid in his
chest cavity, one kidney. I was 4 months pregnant.

My response was to 1) wait for confirmation by the amnio results,
2) research the hell out the the various "syndromes" the genetics
counselor thought it might be and 3) get support (counseling).
The 2 week wait for the amnio results was horrible, but it did
give me a lot of time to gather information to make an informed
decision. By the time I got the diagnosis, I knew I would terminate
rather than let him be born only to die. I remember that there
was some talk that this pregnancy could be dangerous to me, but
I don't remember what the reasoning was for this.

I was given two options: D and E or prostaglandin induction. I
decided on the induction because I could not stand the thought of
him suffering or being dismembered. The induction took 24 hours.
The prostaglandins made me very ill (nausea mainly). He was born
dead. I got to see him and say goodbye, and for that I am very
grateful.

This was easily the most painful thing I have ever experienced.

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Anonymous response 9:

If you got bad news on a prenatal test, how did you respond?

My Specialist was unusually extra nice at my next appointment. He
explained to me that my ultrasound pictures were great, test for spina
bifida ok, but ... I scored a negative with the Downs Syndrome test -
I scored 1/130 and I am only 29. Even though I was sure my dates
would have been out a week he stated that the ultrasound confirmed
that I was probably half a week behind his calculations and that it
would make no difference to the outcome of the results. The
Specialist had already booked me in for the amnio before I had fronted
up t to find out the news.

I went into a mad panic, could not eat for a few days as I was
worrying about whether it was worththe risk of miscarrying from having
an amnio, especially if there was nothing wrong with the child. I lost
about 5 pounds that week, and alot of sleep. The day of the amnio
arrived and got quite worked up. Even though I could not feel a
thing, the psychological impact of it all caused me to faint (I was
lying down too). I was then told that the results would take 3 weeks,
and if I hadn't heard anything, it meant good news.

How did you go about deciding what to do about these results?

I agonised over this for a while whilst waiting for the results. The
amnio was done 2 weeks before the Christmas break and my Specialist
was retiring. I began to worry that by the time of my next
appointment I would be about 24 weeks along in my pregnancy and that
it would be too late to terminate. I actually had nightmares of having
to give birth to it, and then hearing it try and gasp for breath once
delivered. I tried to contact the Specialist, but no answer - closed
for the Christmas holidays. Again, more weight was lost. Eventually,
I managed to get through, he assured me that no news was good news and
that he would not let me get too advanced before a termination, and
described the procedure. Anyway, a week later and still not hearing
any news was very unsettling (like to have it confirmed). I rang
again and found out that all was OK. That was the best news ever.

-----------------------------------------

Please add this to the FAQ file on Prenatal Testing - Overview and
Personal Stories. You can include our first names, but please do not
include our e-mail address. Thanks for your efforts with this issue.
Your page was very helpful to us.


We decided to go in for an amnio at 16 weeks because Mary would be
almost 35 years old at delivery. However, after hearing statistics
from our amnio specialist that differed somewhat from our OB
concerning the risks and benefits of the procedure, and after seeing
the fetus on ultrasound, we decided not to risk the amnio. At 17 weeks
we had the AFP/Triple Screen and it showed and increased risk of Down
Syndrome (1 in 138). We scheduled the amnio/US again. The procedure
went well and there was "nothing obvious" on the US. Mary was anxious
but Tony was quite sure it would turn out alright. After 12 days and
much worry, we were devistated and shocked to find out our baby had
DS. We immediately researched DS at the library and on the internet
and met with a genetic/pediatric specialist. After much anguish and
many tears we made the decision to end our pregnancy. It took all the
courage we could muster to go through with it. Now, a day after
saying good-bye to our little girl, we are beginning our recovery both
physically and emotionally with the support of our friends and family.
It was the most difficult decision of our lives, but we do not regret
our choice or our pregnancy. This was our first pregnancy and to our
amazement, we want to try again.

Tony and Mary

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previous page: 4. Are there benefits for people who would not abort, and, if so, are they large enough to be worth doing the test?
  
page up: Pregnancy Screening FAQ
  
next page: 6. Any people who have had children (siblings, etc.) with some of the defects screened for who would like to share their experiences?